Another year gone by.

Christmas was... so beautiful. Gone are the years that our kids were too small, Riley too lost, to really "get" what Christmas was all about. Last year we got a taste of the typical experience. This year, it was completely here. He was completely "here."

On Christmas Eve, we visited my mom's house. He spontaneously began telling family members "Merry Christmas" in a completely genuine, sweet way. "Merry Christmas, Henry! Merry Christmas, Grandma!" It brought tears to my eyes. He wasn't just experiencing everything. He was experiencing everything, and sharing that experience with others.

His ability to engage in the day, open gifts, have a special dinner, understand the whole thing... just so typical. It's a gift in itself to have him "here" with us now.

I felt myself overcome with grief at the same time as we were celebrating such a wonderful thing. I felt myself thinking about the years where he just wasn't "here." It isn't really sadness, nor is it anger. It's just a loss in many ways. Realizing that we missed out on so many experiences that most parents have with their young children. We are finally getting them now, and I am grateful for that.

Most of the time, I don't grieve a "typical" experience anymore. I don't find myself wishing that we could have had a typical child much anymore. I'm mostly past that point now, toward more of an acceptance that this is our life, and these were our experiences.

I guess it's just one of so many indescribable emotions that comes with everything surrounding this journey.

We were also taught a bit about the value of acceptance and love from others, and how they show that. It's not going to look the same for everyone. And parenting a child with autism has taught me that some people just don't "get" it, and if they do, it takes a while. Most of the time, people truly do not understand what it is like. They have assumptions, but nothing to back them up. I think that is true with many things in life. We just have to be open to learning about each other.

We are coming up on living in our house almost three years. I was not shy about sharing with our neighbors when we moved in that we had challenges with Riley.

It was more about me. It was about my need to vent, my need to have people understand my struggles, my needs, and why I probably wouldn't be a very friendly neighbor. It has taken a long time, and a lot of hurt feels and miscommunication, but I do feel that we are getting somewhere. I don't openly share these things with others now, as I feel it's Riley's story to tell. I also feel that I'd rather people get to know him than make assumptions about him based on a label.

The first thing that began was we started spending a bit more time with them. Even though I didn't want to, we did it anyway. This past fall, a neighbor began engaging Riley in conversations about fire alarms. He is an electrician. It would normally annoy people (he doesn't shut up about it once you start) but this guy... he just let Riley talk. Previously I thought that they looked at Riley like he was less than, that he was dangerous, that their child shouldn't play with him.

On Christmas Eve, as we pulled out of our driveway to go to my parents' house, we noticed a wrapped gift in the newspaper cubby under our mailbox. It was a gift for Riley, signed "from Santa's helper." It was heavy. I figured out what it was almost immediately. I was overcome with a range of emotion, mostly gratitude.

Riley opened it while we were at my parents' house. It was a disconnected fire alarm, a commercial one. This guy had gotten one from work, wrapped it up, put a note on it, and delivered it to our son. He thought about Riley enough to make this happen.

Words can't express what that meant to me as his mama. My dad also seemed very touched by it.

Connecting with people is what it's all about. And he's doing that. He connected with our neighbor so much that he went out of his way to connect right back.

Connecting with us, too. He openly talks about how much he loves us, and he even asks strangers questions about their lives. A few weeks back he asked a man in the grocery store, who was using an electric cart, if his legs didn't work very well. When the man responded that yes, it was hard for him to get around sometimes, Riley said "That must be hard for you."

Sooo much beauty in all of it. How do I even begin to put it into words?

~~

School is going remarkably well. His teacher says he's on par with all of the other kids academically. She also says his social interactions are in the normal range of what you'd expect in first grade. All such great stuff.

His younger brother is now being evaluated for TAG (talented and gifted) and I'm realizing that parenting each child is just that... parenting each child. They all have such different needs, and as we go on I realize that each of them will have higher intensity needs as we go on. It's just part of the normal human experience of parenting.

Here's to another year of learning, growing, healing. 

It's been just two weeks shy of a year. I can't believe it. Well, I can actually. This last year has been a doozy. We haven't really had a computer that functioned well enough to write a blog post (truthfully I don't know how long this one will hold up as I type this out. Riley turned seven last month. He also started first grade.

School this year has been wonderful so far. I can't believe all of the change that came with kindergarten. Socially he did so well. The kids like him, he is learning from the constantly. It even became a challenge at times because he was comparing himself to other kids so much, he started getting frustrated with himself and realizing he had to try just that much harder than the typical kids in his class.

I didn't really "click" with his teacher last year. She was a good teacher, don't get me wrong. I sort of got spoiled with his early childhood teacher, who was fantastic. She really "got" him, and she and I had some great conversations that really helped Riley in the long run. This year, I had a little anxiety about school as summer drew to a close. I didn't know ANY of the first grade teachers, or what to expect. Thankfully, a few weeks before school started I got a call from his teacher. She called me on her cell phone and asked to set up a time to meet before school started. She told me during our initial phone conversation that she hadn't yet read his IEP, because she wanted to get to know more about him first. I was feeling really good about her by this point. Then, I sat down at met with her. We talked for a good while and ended up talking about life in general, about grief, about many things. By the end of it I wanted to hug her (and did) So, this first month of school has been mostly uneventful. She and I kept close contact those first weeks.

Riley is still in regular ed, no aide, and is doing work independently. He has had some anxiety about going to the bathroom at school (we weren't aware that last year another child had bothered him in the bathroom) but his teacher has been in communication with me and has been handling it so well. He is also still a little upset by fire drills, and of course they had one totally unannounced a week or two ago. His class was in gym and his teacher went to make sure he was okay. She went HERSELF. Didn't expect an aide to handle it, and no one told her to. She just thought to herself that he may need some support. In all other ways, he goes to school as a typical child does. All of the routines, sees his friends on the playground in the morning, goes through the routine, does grade level work. It's pretty amazing some days that he's come this far. I try to look at all of that when I start to think of some of the behaviors that are still present.

He knows he has to work harder. And he does. And his teacher and I have had discussions about pushing him so that he gains confidence, yet supporting him so that he doesn't detest a subject. It will be a delicate balance as he goes through school. Reading is slow going for him. He's still testing lower than he should be. We had a friend (who happens to teach reading recovery at his elementary school) come to do some one on one tutoring with him this summer. Again, for the confidence. It was a bummer when we found out he wouldn't qualify for reading help to that intensity at school. But, there is a silver lining in that he's not so behind that he needed it? I don't know. It's similar to my feelings about him losing the medicaid waiver and his intensive therapy. It was great that he was doing so well, but DAMN he could have used that resource. It's hard to be caught dead in the middle so much.


He has started to ask a lot of questions about where his autism came from. On my husband's birthday last month, he brought it up and got really upset with me and asked why I gave him a shot (that gave him autism) We have had a lot of conversations about it, and we never tell him one thing "caused" it or that anything is wrong with him, or he has a limitation. He is developing this awareness on his own.

He's also having great conversations. I love that he's telling me so much of what he's thinking and feeling now. I've seen his relationships with other people blossom so much. I love seeing him with his brothers, especially. Though they fight a lot, the interactions are so typical! It's awesome. His interactions with me have recently taken a turn that he's understanding what love means. Tonight he said he loved me and wanted to relax and watch a movie with me. When I got caught up in other things, he came to get me and said he really wanted me to sit with him. He also loves doing his "homework" book in the evenings, mostly I think because he likes it when I'm taking the time to sit with him.

 Challenges.... briefly. Because there aren't many. )And these are things WE find challenging, Riley does not)

Sleep. Sleep is still hard. He is starting to sleep through the night more often (we probably get two nights a week of sleeping through) and he's getting up really early without realizing that the rest of the house doesn't want to be awake. I don't think he understands that yet. My husband tends to get up with him, and he doesn't communicate as well with Riley as I do, I think. But there's no way I'm getting up at 5:30 AM to reason with him.

Supervision. Riley still doesn't have great judgement at moments. He will damage things in our home, he'll try to take apart things to see how they work. He doesn't always think of consequences. One thing I'm very grateful for is that he's not a wanderer, and he's not a runner. He is grounded, he wants to be with his family, and he knows that he needs parents to take care of him. Maturity. Though this is starting to emerge. I think of what the average seven year old could understand and the responsibility they could take on and he's just not there yet. The good part is that he's younger brother is just 20 months younger, and has really served as a peer model in this regard.

 Grief. I still go through so much of it. His birthday was hard on me. It's funny that I titled this blog "Healing Journey" because I came to realize that this blog is MY healing journey, not Riley's. He is getting older and it's really sinking in that he will have his own thoughts and feelings about all of this one day. My feelings aren't wrong, they just are. I still get sad. I still get angry. I still have "what if" moments. I do feel like those moments are starting to space further out. But when they do happen, they still hurt as if he were diagnosed yesterday. He is such an amazing kid. All of my kids are, actually. This experience has taught us so much. My five year old talks about what it means for him to be younger than Riley, but in some ways, taking care of him like a big brother would. It's a hard thing for an adult to understand, but a kid? I can't imagine. The other two have adjusted remarkably well to all of this. Oh, and his brother Oliver is just about to turn three with NO SIGNS of autism or any other issues. In fact, I believe that he and Jack are both going to fall more toward the "gifted" range, which is a whole new world of challenges for us. But, one step at a time. If Riley has taught me anything, it's to not overthink the future. Just be in today.

 I feel like when I try to blog these days it ends up being a long ramble. I don't have much organization to these posts because I don't know what to say to sum things up. Things change so quickly around here. This kid is definitely proving to us that he can push himself.

I can't believe I forgot to blog about Riley's birthday!

It was so wonderful. As I mentioned in my previous post, we are broke. That combined with school starting made me avoid planning a party until the last minute.

Riley's brother Jack had his birthday party in June. We reserved a park shelter, got favors and decorations, the whole nine. It wasn't over-the-top, but it was more than I've ever done for a birthday. Since Jack's birthday falls during the start of warm weather, weddings, graduations, picnics, etc... not many people came. So when I put out a Facebook invitation less than a week before Riley's party, I wasn't expecting much.

To my surprise, it was HUGE. I want to say there were 13 kids? Plus parents and members of extended family.

But it was simple and wonderful!

The kids played, we had brownie "cake," and it was overall laid back. I told everyone gifts were optional, but Riley ended up with a huddle of kids around him, steadily opening gifts for at least 20 minutes. It was awesome.

Riley had his day, and we had another "typical" experience that we could not have had with the child we had three years ago.

It made my heart happy.

Kindergarten!

Riley started school on September 1.

The very first day, I had him line up with the other kids without me. I have two younger children, and with Riley when you give him the independence he will take off and run with it. Within a few seconds he had turned around and started talking with another child in line behind him.

By the fourth day of school, he was dropping his backpack off on his line, going to play, and coming in with the bell independently. We are about 6 weeks in and though I still stay to make sure he's okay, he does fine with it. We had a few mornings where he was upset by another child (a neighbor girl who pushes his buttons) but other than that it's been seamless. This morning he said "When the bell rings, I will say goodbye, and you will go home." So I did. :)

He is doing remarkably well with the new environment. The noises, the kids, everything. I don't think his adjustment has been any different than the average kindergartener. In fact I think in some ways he's doing better. (I'm far more nervous about our typical four year old going next year!) He loves school and is doing fine with the mainstream classroom. He talks about the kids and his day.

Speech services have started. I don't know much about what she's doing so far with him. I know he likes going. I have seen his social speech change so rapidly lately, just from being around other kids. Just simple things like using people's names when he's talking to them "Do you like that, Mom?" and asking for things politely "Can I have some water?" It has been very cool. He's been picking up on a lot of five year old language, which is the most fun for me to hear.

Socially he's doing okay. We had a playdate a few weeks ago with a child he played soccer with. I've been trying to set up other playdates and have found it difficult. I guess part of me wants so badly for him to make friends. I have to remember that even though it doesn't come naturally to him, he still will. There is a little girl who just loves him at school. She hugs him everytime she sees him in the morning. Riley talks about her and that he likes those hugs.

The grant we received for respite is gone, so we are not having our sitter come anymore. Obviously the money was for Riley so it was starting to wind down anyway with him being in school all day. It is bittersweet to realize that she started with us when Riley was 2 1/2, before diagnosis, and his brother was just 8 months old. They are now 6 and 4, and have an almost two year old brother. She's been with us through all of it!

Also winding down is the money we had for free therapy hours at our old provider's clinic. I believe we have enough for three more Saturdays. It's really just fun for Riley at this point. It's hard to believe that's all over. He's just going to school. Which is strange, because I didn't expect our lives to look like this at this point. We had committed ourselves to three years of intensive therapy. We had no idea he'd get less than a year. There's a part of it that feels very good, very typical. We are not a typical family by any means, but we have more and more moments of typical.

One such moment was the night before school started, we all had dinner at Red Robin. They have gluten free options now, and we gave it a go. It was such fun taking our kids out to dinner for the first time. Although Riley wasn't over the moon, his four year old brother was. And it was pretty cool.

But as I said, we are not typical. Lest I forget it.

I have had a hard time figuring out my own place in the parenting world. I decided before school started that I was going to take a "don't tell them unless asked" approach to the autism subject with other parents at Riley's school. Really just other people in general. There is a family in particular that I have spent a lot of time talking with that have slowly figured out Riley has some special needs, but still does not know he has autism. This in contrast to people we've known via the neighborhood for a while, that already knew and treat us somewhat differently because of it. When a playdate got cancelled with the family that doesn't know recently paranoia set in. Did they know? Who told them? What had they heard? It just screwed with my emotions so much.

My middle son also started 4K this year, and I basically had to spill my guts to his teacher to get her to understand what our family, and Jack, have been through. After that conversation, I felt so much better. I honestly don't know how to handle a typical child sometimes, and because I have an older son people think I know the ropes. I don't. Help me.

~

Money has been a very bad subject. We are hurting. We spent much of our tax return on therapy for Riley over the summer and we have no savings.

We did the cerebral folate autoantibody testing, and Riley tested low positive for the blocking antibodies. I believe we sent the testing in July, and we still haven't seen our DAN! Dr for the prescription for Leucovorin. We cannot afford the visit, we cannot afford the medication. I am thinking about just sticking it on a credit card.. screw it, right? But at the same time, I just can't do it. There is something telling me to wait, and I'm not sure what. Riley is doing so well right now, but he is still very behind with social language. I do want to help him. But I also have to think about the rest of the family, and our ability to keep our home and our health.

I recently found out I need to be gluten free for life, which hasn't been hard at all so far. But the odds of our grocery bill going down just totally tanked. It is what it is.


One of the best things that's been happening lately is that I've been seeing my kids interact so much. Even our youngest, Oliver, who turns two next month, has been joining in. I can see the potential for such beautiful things as they get older.

It's been a few months, just thought I'd update quick.

We have recently stopped doing the social group Riley was going to weekly. It was a crap drive at rush hour, and though the hour away was nice for me (I could leave him and go to a coffee shop, no complaints) it was a lot of stress. He went for I think 6 weeks, and I didn't see a ton come out of it. I don't know that the peers in the group were a great match for him. He's often put with children that are younger and/or lower functioning and the truth is he just needs to be with typical peers. That said, we are utilizing the free hours we received due to my complaint with our former therapy provider against our last senior therapist. He's doing 3 1/2 hours a week in their clinic. We arranged it to be with one of the line therapists we used to have in home, so it was pretty seamless. He gets excited to go and I think it's a good break for him.

We are also still having the line therapist we hired out of pocket come two mornings a week, three hours a piece. That's going okay. She has been taking him out to a friend's farm to play with another child around his age. I think if anything it gives him a break, and she really helps with conversations.

Not doing anything with biomedical right now, just restricted diet. I've been thinking about trying Enhansa again, because he has some skin rashes going on as well as some stimming behaviors we hadn't seen in a while. Overall though, I don't see a lot of reason to add anything in.

The one thing that I'd like to get him tested for are the cerebral folate antibodies. I have quite a few friends (including our DAN! Dr's family) who have done the testing and treatment, with amazing results. B vitamins in general seem to be something that Riley needs, so this is a treatment I've researched a lot. We have the letter all ready from our family doc and just need to do it. It's $100 plus the blood draw and shipping, so I just haven't made it a priority. We have been struggling a lot since we're paying out of pocket for so much.

Some things that have been great lately... Riley has been very independent, wanting to do things on his own. He is now nearly independent with showering (just needs help with the knobs, but washes his own hair and everything) He is also helping out with small chores. His conversations have been very good lately, and he is using expressions (tonight said "Holy crap!" in context) Just overall doing pretty well in all areas. No major things lately, but steady improvement, and such a pleasant child. He and his now 20 month old brother are playing a lot lately, which has been fun to watch. His siblings really are a gift, and vice versa.

Speaking of, that 20 month old, very typical toddler wants to nurse.

Neuropsych Eval: 27 months later

Sitting down to write this post, my kids are running around in the next room and I am thinking it is going to take me several shifts to get out what I want to. This post is that important.

This is the post that I wanted to write in the summer of 2008. I wrote many letters to myself back then (that I've since lost when my old laptop burned out) I don't remember what the wording was, but it was essentially that Riley had made massive improvements and that we expected him to be in a mainstream kindergarten classroom.

Guess what? It happened.

The last time Riley was "formally" evaluated was January 29, 2009. It was about nine months after the initial visit to see Dr W... 5 months in to GFCFSF diet and biomedical treatment. About a month after we'd finished a 40 dive stint of hyperbaric oxygen therapy (HBOT)

So let's just say it frankly: it was bad, but it wasn't quite as bad as it was prior. Let's just say that he was 40 months old at the time, and his socialization score on the Vineland-II was at a range between 4 months and 8 months.

To bring it up to speed, here. Riley lost intensive therapy funding as of last week. His medicaid waiver based their criteria largely on self-help skills, safety concerns, and areas of development that we've seen massive gains in. I can't say it was a surprise, but yea... it was a surprise. Thinking back to that visit in my living room with our case worker, I can't believe the tidal wave of change that can come with one single set of paperwork.

We did attempt to have my husband's union add autism coverage to their yearly insurance updating. We even attended a meeting and wrote what they called "an eloquent letter." It fell on dead ears and within just a few days we received the letter in the mail telling us it was a no-go.

With all that in mind, and the likely hood of an appeal being unsuccessful, I decided to approach this already-scheduled neuropsych visit as a chance to get honest answers. It was nice not to need a report written in a way to "get" something. It was just written as it was. A big plus to seeing this Dr is that he doesn't know we've done biomedical treatment. He really is an objective evaluator.

I was nervous as hell for this evaluation, though. They are stressful, and awful, and I probably have more trauma attached to that man's face than I'd ever want to admit publicly. He is the guy who told me something extremely devastating and life changing, after all. And I was the mother who freaked out. I was the one who was so full of snot and tears you'd think someone had died. I was the one who didn't want to hear any of it, and didn't hear any of it for weeks... maybe a month.

Riley and I made it up to the third floor. It was hotter than hell in there. The doc came to get us and Riley said "Hi Dr W___." as we walked into the doorway down toward his office. I sat down in a chair near Riley, who was seated at a small child-sized table. Yep, that was the same table, alright.

He looked at me with that same, blank look I remember too well.

"So, what are we doing today?"

"Well, I'm hoping we can do an evaluation and see where Riley is at... how he's doing."

"Well, we've got the diagnosis of autism already. So..."

(Explain Medicaid situation, et al)

Very quickly, his demeanor changed from "oh, great, this woman is coming in here with some false assumption that her kid is better." to him sitting back in his chair, with a very surprised look on his face,

"Huh. I see why we're in this pickle."

He began doing the testing pretty much right away. My heart started to pound. I felt tingly in my ears. I felt anxiety roll over me. I thought I was going to have a panic attack.

So again I became the mother who freaks out. I asked to go to the bathroom, and he walked me down. Riley became confused and started following us. They actually did some of the first few exercises in the hall way. I went into the bathroom, where I chugged a little Rescue Remedy, splashed some water on my face, took a deep breath, and within 90 seconds was able to come back out.

This is okay. It's really okay. It's okay if he says he's doing better. It's okay. It's okay.

I knew as he was moving through the testing that he saw what I saw. Riley is a different kid through and through.

The doc and I ran through lots of ways to get funding. We ended up deciding on an honest report that just told us how Riley was functioning. I filled out two of the same assessments he had the last time. So, we had three different ways of looking at his neurological functioning. This gave a really clear picture.

There was more than a few moments at the appointment that made me chuckle to myself, though.

When I took Riley in January 2009, he told me that there were "two types of autism." One type would have a low IQ, not learn much of anything. The other, would make steady progress and would "look autistic even when getting their PhD."

Well, guess what, my friends? There are now three types of autism, according to this Dr. Yes, you heard me right. Three types. The third type?

"Kids like Riley, these rapid learners. They just set their own curve."

He also mentioned in the report that rapid learners were "most likely to normalize" with intensive therapy. News to me! No one told me my kid could "normalize," and I doubt he thought that was a real possibility.

So it leaves the question-- what has changed in his practice the last two years? I would be willing to bet a lot of people are trying, and having success, with biomedical.

I was nervous to get the report. It took about a week to come. When it finally came I sat in my living room and read it.

So much has changed. I try not to get too caught up on numbers, but on the PDBBI he was in the 60-70 range the first time (I don't have the paper in front of me) and now is at 44 for the autism composite. Most everything has decreased dramatically.

On the Vineland II he is right in the age range for everything... except, surprising to me, daily living skills, which he is about a year behind. Motor skills? Right where he's supposed to be. Everything else is around 80% or above. This was not the case previously. He was behind everywhere.

The best part of the report is the language that he used. Things like "impressive progress" and "rapid progress." It was just wonderful to read.

So, what do we do with this information?

We are not continuing out of pocket with our previous ABA/intensive therapy provider. We have not been happy there. Riley had tried a few in-clinic sessions, but they are so expensive for what they are. He really is so far beyond much of what they do with the other kids. We did apply for a few grants, and now we may be getting a little bit of therapy due to my complaint against one of our therapists. We'll see. We may do some in-clinic hours there if we are able to get them and not having to pay for them. I just don't think it's worthwhile for him otherwise.

What we've done is hired one of our past therapists under the table. She'll be coming 6 hours per week until school starts. Working mainly on social, communication, regulation. We also still have our respite provider, who works for the same therapy service. She'll still be coming 4 hours a week until school starts as well.

Tonight I took him to a social group that is lead by a speech therapist. It's relatively cheap so we'll be giving that a try for the next few weeks. It's a long drive, and it falls right over our dinner time... but if it helps, it is worth it. That would be 1 hour a week. Very interesting to add to this... one of Riley's old OT's works there now. He was our itinerant OT through the school district. Riley doesn't receive OT anymore, of course, and this guy hadn't seen him in two years. It was really nice to see him, and show him how well Riley is doing.

Riley also was tested after his IEP and will indeed receive speech at school next year. This is really great news. I also am confident he'll do really well in general. His IEP is great and thanks to a visit, the IEP and just recently the Kindergarten visitation day, I am feeling like I have the respect from the principal and teacher that is needed to have a good communication. I feel like if he's not getting something next year, they will help me get it for him.

Last week was our first week without "official" therapy and I have to say, a weight was lifted in many ways. We are moving on to another phase and I cannot be mad about that. It is what it is.

It has made me think a lot about his healing, though. A lot of people have asked me, as I've shared the news of his great progress, what we've done. It's a long list of course, and I never know what to say "did it."

The truth is no one thing did it. His body healed. Healing is not something that happens quickly. We are so used to an immediate fix with medication, etc. True healing is not like that. True healing takes time. There is no pill you can take to make a cut heal, a bruise heal. There is no pill that makes autism heal.

What I can tell you, though, is that gut healing was first and foremost the biggest thing for Riley. Staying the course with the diet helped tremendously. Second to that, treating dysbiosis (Enhansa was the best thing we did, by far, for this) I believe what happened is that the gut healing lead to reduced inflammation and better nutrient absorption, which lead to his cells working well. I believe it was a cumulative effect. Many many things peeled back the layers upon layers of inflammation until suddenly, what seemed like overnight, he was a different kid.

It absolutely wasn't overnight, though. It has been a long 35 months since the initial neuropsych visit, and 33 months on the diet, 32 months on biomedical. We have lived a lot of life in that time. It became part of our life, really.

Part of healing is also who you choose to have in your life to help you. Very early on I was careful about who I kept around, weeding out non-supporters. In doing that, we truly had a huge support network of family and friends. I am at the point now where I don't even associate with people who don't believe in what we are doing for him.

That, I think, has been important. My parents. My friends. Respite. Autism friends. Non-autism friends. Extended family who couldn't do much more than send a check, but had NO IDEA how badly we needed those checks! It was just so important and amazing. We are truly blessed. As much as I can complain about how people don't give a shit about autism, people gave a shit! And continue to.

I know my time is waning down and I should figure out how to end this post. It has been such a rollercoaster the last 6 weeks but a lot has come out of it. For anyone who is just starting this journey, or is in a place of frustration, sadness, anger... keep the faith. I've been there. I have all of those feelings, too, and will probably continue to. As parents we have our own healing to do. The trauma is like combat (really, there was a UW study that proved this) and we have to be gentle with ourselves.

Also, last but not least, we have to be gentle with our partners. Chad has been an amazing supporter in all of this. He may not be up at nearly 10 pm writing a blog post, or carting to and from appointments, or going to school stuff. But he's here, he is present. He's working hard for his family. He understands that I won't ever be satisfied... I want the very best for all three of our sons.

Ah. So, I can finally say I typed "the" post. Here it is. It's beautiful, ain't it?

Sometimes I have to read back on this blog (or elsewhere) to help jog my memory of the last three years. It's all such a blur.

What do I remember about three years ago that isn't yet on this blog?

I was riding in the car with a friend of mine, on the way home from a small get together at a friend's house. I remember vaguely her talking about taking Riley to the neuropsych we saw for the initial diagnosis (May 2008) I don't remember if the word autism was used at that point. I remember this was also the friend who had told me to watch the videos made by “Silent Mia” http://www.youtube.com/watch?v=JnylM1hI2jc and realizing that my son did those same hand motions. At the time I didn't know what hand flapping was.

I'm fairly certain this friend knew something more was up with Riley and was gently trying to tell me. I'm so grateful she was gentle, and even more grateful she told me.

I can honestly say that after working in special ed for 2 years, after being a nanny for a boy with autism, having a mother who has worked in special ed for 18 years... I don't think I had a clue what autism was then.

I knew my child was different, that's for sure. Almost four years ago, my mom was the first person to bring up the sensory issue as being a, well... issue. After asking some friends online what I should do, I made the appointment with Birth to Three in August of 2007. The first visit was in October. I remember thinking I must be looking for a label, fishing for a diagnosis. There's no way anything was “wrong” with my kid. In fact I remember a response on the messageboard I posted on left me feeling that way. But when I went online and did the sensory inventories, he definitely had differences. Still, when they did the evaluation and said there would be no question he'd qualify, my heart sank a bit. This was a system I didn't want to go into.

Looking back, autism hit full on right around that time. That's when I remember playdates being hell. Chasing him around. He was fixated on ceiling fans and light switches. He didn't know how to play with toys. He was exhausting. I was exhausted, too, because I had a very young baby (my middle son, Jack, who is now turning 4 in June)

I think that's when flapping started, too. He used to do this dance that was very similar to “FlashDance.”

That is the time that makes me saddest. The time from when that started until we started treating his autism. It was a very hard time for me as a mom. Stressful, but also full of self blame. I was certain that I was doing something wrong to make him act this way.

I had no idea that he was behind with social communication. It was also a few months into OT with Birth to Three before I noticed that he wasn't really playing with his toys, and they started some suggestions with play. It wasn't too long before we had an early childhood teacher added to the team. I think this was prior to diagnosis.

Once Jack hit the age that Riley was around diagnosis, it became very clear what we'd missed out on with Riley. Now we have a third son, who is neurotypical thus far at nearly 17 months. We are definitely already seeing him do things Riley never did. (Example, he “feeds” a baby, he likes to play with Little People, he sings songs, etc)

Where am I going with this?

My beautiful baby boy was lost in there for a while. Now that we are getting further away from it, I see how bad it really was. I am glad we intervened when we did. Although I am upset at the latest things that have gone on with therapy funding, etc I am reminding myself that he is worlds different now from when I started this blog.

I had a conversation on the phone with Riley tonight. He's staying at grandma's for a night. We chatted about what they were doing, about what he was eating for a snack. I think back to when phones upset him, he didn't understand what they were and he hated the way they sounded. And of course a time when he would have never been able to carry on that conversation.

He's just come so far. I'm so amazed by him every single day.